Multiple sinus surgeries

A little back story here… I have always had sinus problems my entire life growing up in one of the allergy capitals of the US, Austin, TX. I moved to a small town in TN in my early twenties and thinks went really haywire. I became very ill around Christmas and felt so terrible from the never ending sinus infection and the resulting treatments that I could barely get out of bed. I was finally dragged to a specialist by my then boyfriends mother who yelled at the doc and said “this girl is over medicated and you need to fix it!” So it was decided I would have sinus surgery, in a small town… In Tennessee. My mother flew in for the surgery, which turned out to be barbaric. During my recovery nurses just kept letting my iv run dry, my mom was having to stay on top of them constantly. I sat up and began hemmorhaging blood from my nose which panicked everyone. Anyway you get the picture. That was 2001. Fast forward to 2011 and I’m living in civilization again in TX. I had a few sinus infections here and there but nothing I couldn’t handle. Suddenly I get this infection that just knocks me down completely. 6 rounds of antibiotics, yes you read that right 6, and a bactriban nasal rinse later and I finally had a clear ct! Great news for everyone but me since I was practically on my knees crying in my ENT’s office because I was still in excruciating pain. He diagnosed my TN but also said my first sinus surgery was a hack job and needed to be fixed. We decided to go ahead with a second sinus surgery hoping that out of some miracle it would help my tn pain. No dice. I had a terrible recovery because my tn pain was on the same side as my surgery. Went to the neuro who tried all the normal anticonvulsants with me. They worked a little and for a short te but my life had ground to a complete stop from the pain. I’ve now had two mvd’s, one in July 2012 and another in February of 2013. I’m actually in worse pain after my second mvd AND I have another sinus infection! So back on high levels of anticonvulsants AND antibiotics. I can’t do a masala rinse anymore because it hurts my tn so much. It has just been a horrible ride for me between the sinuses and the tn, and it’s all ALWAYS on my left side. It just doesn’t seem like it could be a coincidence. I’m scheduled for gamma knife on May 6th with a world renowned neurosurgeon so I’m hoping this is the key for my tn relief. I guess I just wanted to share my story in case anyone else has been through something similar. The one thing I would pass on from my experience is do not have sinus surgery 2 months before an mvd. That was just miserable. Also my ENT said the netipot is too passive and to get the squeeze bottle one also made by neilmed and can be found at every walgreens on earth. It gets way more gunk out and actually gets up into the sinuses better.

A question, please: have you had any success with Tri-Cyclic Antidepressants either instead of or in addition to anti-convulsants? What you're dealing with most likely isn't classic TN, but iatrogenic neuropathy (nerve injury). The TCA meds are often more effective against this class of pain.

FYI, the record of effectiveness for Gamma Knife against neuropathic pain is quite mixed. The stats I've seen suggest less than a 50/50 shot. Please consult with your neurosurgeon in advance of the procedure to learn of his personal success rates with trigeminal pain that derives from surgical injury.

Regards, Red

I have been diagnosed with both tn1 and tn2. I have pain in all kinds of places besides the sinus area. Traditional lightning bolt strikes that knocke to my knees generally occur through my temple and across my cheek bone. I also get a feeling that I’m being stabbed through the ear along with agonizing boring pain at the corner of my eye/nose. I have a few other spots but those are the worst. We have sort of forensically looked back at my history and discovered that I’ve been suffering from TN since I was a teenager at least, but I was just lumping it in with my migraines I’ve had since I was a child, and I had long remissions. I’m sure all the sinus surgeries haven’t helped the matter! I will for sure ask my surgeon though. He is Dr. Dong Kim, the neurosurgeon who operated on Gabby Giffords after she was shot in the face. I feel really confident in him and his team at the Mischer Neuroscience Center in Houton, TX. It is always worth a double check though since I have venerable even heard of that diagnosis before.

Your longer history of Type I and Type 2 TN may have been complicated by the nerve injury (neuropathy) done by your first sinus surgeon. That's what "iatrogenic" generally means: "created by medical therapy".

The ear pain you report might be something a bit different from TN, involving vascular compression of the Nervous Intermedius which runs between Cranial nerves 7 and 8 (if I recall the numbers correctly). One of the challenges for Gamma Knife surgery will be finding a target that small, as this type of compression is often missed on MRI, and even the nerve itself may not be visible in lower resolution MRI imagery.

Regards, Red

It’s early so I forgot a few things. I also have a constant dull pain on my cheekbone and that whole side of my face randomly becomes horribly red and burns. I have tried a myriad of drug combinations, including amytriptaline at least from the tricyclics. I may have tried others from that class of medications, but it has become difficult to remember them all. I have found that neurontin and tegretol give me the best relief, but having to increase them to the point that I can’t be a functional person has led me to surgical options.

During my first mvd they found a blood vessel that was under the nerve instead of on top (my parents got the post surgical report from the surgeon since I was still out of it so I can’t be any more specific about which one at this time) and definitely compressing the nerve. He also said he found scar tissue on my nerve and “cobweb like tissue” all over the place adhering the nerve to other structures in the area (again a little vague, but that’s all I got). I was pain free for about 4 months when it came screaming back and by 6 months I was completely debilitated again so the surgeon decided to open me back up to see what was going on. He put a larger piece if Teflon in and repositioned it to keep the blood vessel off the nerve. He also did something called “roughing the nerve.” When I woke up I knew immediately that my pain was not only still there, but even worse.

When I went to see my new surgeon, Dr. Kim, I spent all day with his team of neurologist, radiation oncologist, and him completely reviewing my entire case start to finish. He indicated that “roughing the nerve” doesn’t work, and sometimes causes more pain as it did in my case. He definitely said continuing to open me back up would just cause more damage to the nerve and to me in general. I have not responded well to most medications other than neuro tin and tegretol. I tend to get horrible side effects from things. Whole I was there they indicated in my case there is about a 75% chance of being pain free or to have significant pain reduction so I can at least lower my medication dosage if not get off. He indicated that if this doesn’t work, since I’ve already had several failed procedures, we could look at a possible rhizotomy.

It’s all very scary and I definitely want to have all the information possible before I actually have the procedure. I will for sure call his office and ask to speak to his neurologist about the possibility of iatrogenic neuropathy.

Just as an aside, the neurologist there indicated that because the red burning face was really the autonomic nervous system at work that was probably something different, and possibly cluster headache. She has started me on indomethacine to see if that helps. I had already noticed a significant reduction in the red burning face by upping my neurontin though so it’s all very complicated and confusing.

Hi HCal

I'm so sorry you are suffering so much, I cannot understand why this keeps happening and a propoer diagnosis and treatment is so difficult in this modern age. However, it is and your story hus struck a real chord with me. I too was told I had a sinus problem having suffered with a constant headache and post nasal drip. Antibiotics helped sometimes but somethimes they didnt. I too underwent two horrific sinus operations which made the pain so much worse. I became almost suicidal and was eventually given Lyrica which for the last 7 years has kept the pain at bay although not completely and the 'sinus problems' did not improve at all. The Lyrica was beginning to fail early this year so like you, same sinus problems & more pain than ever. I wont go into my whole story as I could write a book, but thanks to some help from Red, I discovered a condition called Hemicrania Continua and insisted my GP gave me an Idometicin trial. My symptoms went within days. I saw a specialist in London who confirmed the diagnosis and I have been given Botox treatment which is working really well. Hopefully in time, I will be medication free. My pain is on right side only, a really deep ache and pressure, crushing sensation. Together with loads of thick mucus, watery eye, swollen eye lid, red face, neck pain. The condition presents as two or three different ones, sinus, nerve and sometimes neck but it is all part of the same condition. It's jjust that your story is so similar, I wanted to respond. I hope that this may help and you can get some treatment that works really soon

Steph

Steph,

Thanks for responding! I will check into that diagnosis as well! Your symptoms do sound VERY similar. I have been taking the indomethacine for 3 days now and the only difference I see so far is yesterday I started vomiting pretty violently after just going shopping with my parents for a few hours. I am 9 or 10 weeks post op from my last mvd, but have not recovered well at all. That’s the first time I’ve vomited though. As I’m typing I’m getting nauseous again aster taking the indomethacine with breakfast. So far no good :frowning: the neurologist had indicated that if it did work she would order some oxygen tanks for me as well. Do you use those?

I was 1.5 years away from completing my BS in Biology with hopes of going to med school when this attack knocked me to my knees and became completely unmanaged. I’m still hoping that I can get accepted to med school when this is all under control, but if not I will pursue a Phd in Biology. I find medical research papers quite fascinating and also easy to read so if there’s any research I particular you think will help please let me know!

I felt pretty nauseous for the first couple of days but this did wear off. I wasn't actually sick though. I had to take high doses for it to work - 75mg 3 times a day. After taking it for a week I had some nasty stomach pains but luckily I hardly have to take it now since I had the Botox treatment. I hope the indo is the answer for you as proper treatments and lifestyle change really help this condition. As I live in the UK I think our treatment options are fewer than in USA. I am having to pay for the Botox as it is not available on NHS for this condition. Unfortunately, I have had to give up running which is my passion. I had not realised that exercise was causing so many bad flare ups and I was running marathons! The Indometicin cleared up nearly all the symptoms in 4 days. I forgot to mention, I also have migranes on top of the other symptoms and I also get the jolting pains down the side of my head. Usually come in 2 or 3 volleys lasting about 10 seconds each. Oxygen is not usually given for HC as it is with cluster headaches although with some it can help. I have not been given it. There seems to be quite a few headaches that can cause these symptoms but all have different treatments so it is well worth checking these out, they come under the group of headaches called TAC headaches. Not sure how much research is being done in US but would think more than in the UK.

I'm so sorry that this has interupted your studies, I do hope that you are sorted and you can get back to them soon. I too was in the final stage of completing a business degree but had to stop 3 years ago because of all this. It seems though that things are inproving now so never give up hope. You will get there in the end.

Good luck with everything

Hi Hcal, did any of your specialists do an actual biopsy of your sinuses, because it sounds so familiar to my case , a year on just about every anti-biotic out there and nothing until they did a biopsy and sure as can be it was aspergillus, a fungal infection which it just fed off of the antibiotics and grew until it destroyed most of the tissue in my sinuses and the back of my throat.I almost lost my life over that and still fighting to this day. Had multiple surgeries. Had to go to Toronto, Mayo clinic and National Institute of Health in Maryland to get the surgeries done because no one around here where I live would touch it. I,ve been diagnosed with what they call Chronic Invasive Aspergillosis Sinusitus. It is a life threating illness with a high mortality rate and reocurence is common. Please get that checked , antibiotics are the worst thing they could give you for that, because the fungas just feeds off of it.Thats whats been the cause of my TN because of all the nerve, bone and tissue damage.

Dave (deveda)

They actually did cultures with the last two infections I had just to be sure it wasn’t fungal. My ENT scopes me every time I see him to look in there and be sure. He said fungal infections have a very different look when you see them. When I did the compounded sinus wash with the infection before this one he added an antifungul just to be sure.

That is just awful what has happened to you! Have you had sinus problems your whole life or did it just start with the fungal infection? Is the fungal infection cleared up at least now? I have done a lot of research about different sinus diseases since I have suffered for so long, so I’m pretty sure my problem is not a fungal infection. I think my problem is partly a byproduct of living in one of the worst regions in the world for allergies unfortunately. My TN 2 tends to feel like a sinus infection also, so I’m sort of screwed. Probably, like you, from damage done from all the infections and a bad surgery.

I started looking through the posts yesterday after some back and forth-ing with HCal about how we both started this hell with sinus/ear infections. I was given round after round of antibiotic (about 80 days) treatments. At first I’d feel a bit better and then it would come back even more ferocious than ever. One specialist wanted me to keep on Avelox for another minimum of eight weeks. I refused, thinking it would kill me. My GP backed me up. It took weeks to get a cat scan and it came back clear as a bell but showed up a fairly bad deviated septum and a bone spur, and the roots of two molars running along the sinus cavity which was thought to be of no clinical significance (like, to whom, I wondered, it sure meant something to me!). I never had any discharge except for stuffiness. By then I had chronic mastoid area deep dull ache and one by one other symptoms showed up as well, all over the entire left side of face and back of head. No one ever did a culture. I didn’t know to ask. At that point I went looking for evidence that the antibiotics had caused nerve damage but I couldn’t get a doctor on board with this idea. Then the volleys of electrical storms deep in my head on the bad side. And all the teeth gum and soft palate throat and swallowing issues began. If i lightly touched a certain area of my face I got immediate feedback with sensations that were like electrical paper cuts, so brief as to almost doubtful except for the terror! Winter came along and bam, cold was the worst trigger for everything and my scalp got involved. My back molars felt like they were being strangled but I’d did not for a moment think there was an issue with my teeth. I had a root canal done years ago and while that pain was extreme, this new one had such an unbelievable quality that was almost indescribable. Now burning pain is daily, everywhere left side. The volleys of shocks deep in my head seem to have burnt out. I do have SCA compression, waiting to see NS, but I think something else is going on and has been since I was a child. I too think I have have had episodes of this that have gone into remission. Spinal tap May 8th but maybe I need something else as well. Thanks for all the sharing of the stories. Everyone has added info that as they say in the MasterCard commercials, is Priceless.
Peace and kindness to all
Bellalarke

This site has been, as you say, “priceless” for me as well. Being able to compile information from each person’s story has made me so much more of an informed patient. I’m hopefully going to continue pursuing a medical degree when I get pain free again and I think all this knowledge and my personal experience, along with the stories of all of y’all’s experiences, will make me a much more empathetic physician. Someday we will all have answers I hope. I’m so ready to be pain free!!

No I never had any sinus problems in my entire life. It was about 10 years ago when this whiteish greyish mass appeared at the back of my throat and I would be having extreme pressure in my sinuses.,but the Drs. thought it was just a sinus infection with post nasal drip.But they tried every antibiotic known and nothing helped , it continualy got worse.They took sputum samples and samples of the stuff that I was flushing out of my nose and tried to culture them and examine them and everything came back negative , finally was sent to a E.N.T. in Regina and he did a scope and a C.T. scan of my sinuses and that mass of stuff was all over in my sinuses and on top of the soft palate and down the back of my throat, and the only way they were able to indentify it was with an actual biopsy of the tissue in my sinuses and throat.They were shocked that it was Aspergillus Flavus. Some how my immune system was so low that I picked up that fungas.Since then its been a non stop battle to try and keep it from becoming invasive again because once you have those fungal spores in your body ,they are there for life I had my last sinus debridement last april and the surgeon said there might not be able to do anymore surgeries because its coming to close to the brain on one side and the eye on the other side. I had a feeding tube put in last Nov. because I could no longer eat due to the severity of the pain, from T.N. and whatever else. So its all about quality of life is'nt it? We do what we have to to get by.Thats why I say anybody that has chronic sinus infections to please get checked for some type of fungal infection.It is very hard to diagnose because they can't culture it all tests come back negative.But it can be diagnosed properly by biopsies. I,m just curious to know how many people with T.N. have to have a feeding tube to eat.Because that food and liquid would always come out of my nose when ever I drank or ate and that would spur on a attack of intense burning pain and it would spread all around my head and I would have a Intense headache for the remainder of the day, thats why I'm on so much pain meds. Anyway thats been some of the stuff going on in my life lately Thanks, Dave (deveda)

HCal said:

They actually did cultures with the last two infections I had just to be sure it wasn't fungal. My ENT scopes me every time I see him to look in there and be sure. He said fungal infections have a very different look when you see them. When I did the compounded sinus wash with the infection before this one he added an antifungul just to be sure.

That is just awful what has happened to you! Have you had sinus problems your whole life or did it just start with the fungal infection? Is the fungal infection cleared up at least now? I have done a lot of research about different sinus diseases since I have suffered for so long, so I'm pretty sure my problem is not a fungal infection. I think my problem is partly a byproduct of living in one of the worst regions in the world for allergies unfortunately. My TN 2 tends to feel like a sinus infection also, so I'm sort of screwed. Probably, like you, from damage done from all the infections and a bad surgery.

Delveda I am so sorry for all your big fungal issues. You mentioned quality of life. What do have for good things in your life?
Bellalarke

Well I have good things like my kids and Grand kids , but if you can't enjoy them whats the point in living right ?Thats what I mean about quality of life ,you walk around all day or lie in bed feeling very miserable because of the pain and you hate the way you feel and you can see what its doing to your loved ones like your wife and you know they just want to help and everything, so some times I just feel,with all things considered, I might be better off not living. But some how you pull through it . Its a constant battle too with trying to arrange for appts. and long waiting times to get in to see a specialist,but I guess a lot of people on this support group go through the same things I do and even feel worse then I do. Thats why I am so thankful to have found this support group and here about other peoples battles with doctors and pain etc. So thats a good thing. I think the big thing ,at least for me, is to quit feeling sorry for myself when I have hard days,and to think about the needs and concerns of others. But you probably know sometimes its very hard to do when your at wake at night in such pain you don't know what to do. But I am thankful for my wife and family and the people on this support group.

Thanks ,Dave (deveda)

Hey Dave, that’s a lot of really deep pain. I’m glad to know you’ve got family around. I’m wondering what kinds of interests or passion you had before this insidious illness took over your life. Would you like to join us over in HCals post, Something to Look Forward To? Can you think of something that you can hold quietly in your mind that you’d like to share. I think every moment we can scrounge up to think of something other than our pain is an opportunity to make a little hole in it.
B

I have had a million cts and MRIs since I’ve had two brain surgeries and two sinus surgeries and I definitely don’t have any masses. That’s just awful man! I just got out of the hospital with a back tn/migraine attack. It really does completely suck away your quality of life. You just have to find small things to be grateful for and enjoy.

I have been lucky enough (that’s sure relative) that my pain doesn’t start until 5 to 10 minutes after I eat so I am able to cram food in before it gets bad. I take my medicine around my eating schedule so I can try to avoid bad attacks when possible.

I’m so sorry you are going through such a horrible and unusual situation. I’m really glad you are finding support here though!